New to a mothers heart...

[C.Alyse'sMom]

Hello everyone!
I am a 27 yr old new mom, who was diagnosed with PPCM two months ago. I was devastated when the dr explained this rare disease to me. I am trying to cope with being a single mom (baby is 5mos today)& BF is away in school. I'm also away from my family.
Although friends & family have been supportive, they don't know what I'm going through. There are many days where I cry when I look at my baby and think that I might not be here for her. I am paranoid about every ache and pain that I feel, but I'm prayerful b/c I know there's hope for a complete recovery.
It is so nice to have a forum like this where I don't have feel alone.

[dawn]

Glad you found us! I hope you find much hope and support here.

Many of us have been in your shoes. It does get easier. How are you doing now? Your EF and meds?

I'm 4.5 years post diagnosis. The first year was very difficult. I'm doing great now, and enjoying my kiddo and life to the fullest.

Looking forward to getting to know you and your little one!

dawn (and lily)

[C.Alyse'sMom]

Thanks!!
I'm feeling much better, however since yesterday I've been having a little discomfort that comes and goes. I left a msg with my drs nurse, but she didn't call back. This is what I meant about being so paranoid. I'm like...do I need to go to the ER, or what?
Since this is fairly new to me, what is an EF? I'm still learning the terminology of PPCM.
I started out on 7 meds (including aspirin & water pills), but down to Coreg, Linsinopril, and Spironolactone. I've had 1 drs visit since I was diagnosed, which was after 6 wks. My next appt is mid May.

taryn

---after reading several other posts, I've answered my question. At diagnosis I was at 10-15%. Six wks later I was 25-30% (3wks ago)

[marissar]

This soon out I would think you need to be seen more often. I was seen once a week and then after a few months twice a month. I am 9 months out and well on my way to recovery and I still have an appt once a month.

[C.Alyse'sMom]

I know, right? He said that he normally waits the 6 wks to see if the meds have had a chance to take affect. He also informed me that it usually takes about 6 mos to really see if there's any improvement. :confused:

[mikeyandBellesmommy]

Hi adn welcome, My doc did the 6 weeks intervals too for the same reason, wait for the meds to regulate, they told me to call inbetween with any concerns, I also had a visiting cardiac nurse for a month post diganosis too though.

I was single mom with my first as well for 3 years, and had to handle PPCM alone and scared and I do remember the what if something happens to me worries, I was so scared my daughter would have NObody.. I was 15% at diagnosis, within 6 months I was up to 55% and well then I felt more secrue that I would be around for my baby,

now 4 years post diagnosis, I reconciled with my baby's dad, we actually had another baby together a little boy and my ef is back up to 60%..

Things work out in the end, take your meds, see your docs and try as hard as you can to take the best care of yourself as possible, you have already seen great improvment..

Cari

[Shannonkk]

Hello and welcome. I am new here too...looking forward to getting support here. Everyone seems very nice & helpful so keep coming back! ;)

[JAMESFETT]

From your messages it is apparent that:
1)you are already improving
2)your EF has already doubled
3)you are over the most dangerous time
4)your doctors are excellent
5)you are on the "best" medications.

Many doctors in the USA think that if recovery ín PPCM hasn't happened in the first 6 months it won't happen. That is NOT the case. Healing continues for many months, even years, after that.

Sending you prayers and best wishes for complete healing. The ladies on this network can give you lots of information and support. If I can be of help with info to you or your doctors, here's my contact. (by the way, where are you located?)

James

[mandyb]

Hi!

Wanted to welcome you and let you know that you aren't alone! I was diagnosed in December of 2003 and I just barely found this website. Since I fould it a couple of weeks ago, I feel I have recovered emotionally much more than I have at any other time. The people here are so helpful! I hope it will help you too! You aren't alone... we understand what you are going through. Best wishes to you for the best recovery!

Mandy

[Lisa V]

Welcome to this wonderful site......
WHen I was first diganosed 5 years ago I had no where to turn and this site was my life saver. My family and husband were awesome but they did not really understand what I was going through and the woman on this board did. We are hear to help, give advice and lend our shoulders too when we need to cry. It does sound as if you have good Dr.'s and that you are defintely on the road to recovery. Your EF has increases already and with plenty of rest and continuing on your meds you will see more improvement. Do not lose hope and stay positive. When I was diagnosed my EF was at 10% and after 3 years it was at 35%, just recently it has increased to 55% but as Dr. Fett as stated improvment does continue for years to come.

[momofthree]

Hi and welcome. You are already on your way so keep positive. What great improvement already. Focus on the good things and trust that your body will let you know something is wrong ... that helps me to focus on living rather than every little thing that I might feel. This is a great place and I am thankful you have found it. You have been given great advice already so I will just ditto what everyone said. You are on your way...don't doubt it for a minute. Alison

[C.Alyse'sMom]

Thank you everyone for the warm welcome! I've only been here for a day, and I already feel better about having PPCM.

Dr Fett,
I am in Stone Mountain, GA.

[SarahsMom]

C.Alyse's Mom,

Hi, WELCOME!!! I live in Roswell, GA! You live very close to me!!!! Where did you deliver? I was at Northside and was diagnosed very fast (thank goodness)!!! I know you are so scared...I was too! I would literally stay up for days because I thought if I fell asleep I might not wake up. The doctors told me I'd probably need a heart transplant, if I did heal I'd be on medication for the rest of my life...yadda, yadda, yadda. I was ready to go out and find a headstone...it was awful. I'm 13 months from diagnosis my heart has healed completely and they've taken me off ALL my medications. I'm living a completely normal life doing everything I did before the only difference now is...I do everything with my little girl!!!!

REST, REST, REST!!!! Give your heart a chance to catch its breath...it's been through A LOT!!!!

Take care!

Kari

[momoftwoboys]

Hi, and welcome to this wonderful site! I'm right around your age (will be 27 next month) and was diagnosed 3 1/2 years ago after my second pregnancy. It's been a long bumpy road, but trust me, it does get better. Sounds like you are already on that great "road of recovery". I would be so happy if I were you, with such improvement in such little time. I didn't see any improvement in the first year (and what a long year it was). You can't say you are alone anymore because now you have us, your new PPCM family. Happy healing! :)

[C.Alyse'sMom]

I haven't been here lately b/c my mother and aunt are in town visiting.
Sarahsmom, yeah we are very close to each other! I delivered at Dekalb Medical, my drs. don't deliver at Northside (where I wanted). What cardio group are you with?

Thanks to all...really! I've been telling everyone that I found a site that makes me feel that I'm not alone. You guys are great!

[SusanD]

Welcome to our site and so glad you found us ! Please know that you are most certainly not alone and we are here to encourage you and answer any questions you may have.

[margaretinva]

Taryn - welcome to our group - I'm glad you found us! We are here for you!!!